12 October 2012
I’m glad to say that my voice has strengthened again, from a whisper to a normal level of speech. Well, that’s not quite true. It sounds like me but with a sore throat, as if I had been lecturing too hard or recovering from a nasty cold. It seemed ridiculous to me that with everything else working, in the end, it was the volume of my speech which would let me down – something I had never even considered. Anyway for the time being that seems to be okay. Somebody mentioned that there was available a voice enhancer I imagine one somehow attaches this to the microphone, so this is something I shall look into.
There seems to be a consensus that I look and sound better than I did a few months ago. I think they are referring to the withdrawal symptoms from the morphine when I really did feel pretty rotten. I do know now, from several sources, that the doctors would not have been surprised had I ‘slipped away’ during that period. As I have mentioned, in retrospect, putting two and two together, things fall into place funny what you say. For example, unbeknownst to me, one of my medical advisers advising Smiler not to go abroad for a holiday in April. Of course, I had no idea that at that stage my life was very tenuous and it would have taken very little to tip me over the edge. It’s a bit creepy really as the act of dying and the journey one takes, is something to which I have not given a great deal of attention. Now, feeling considerably better and reasonably normal, except for a little breathlessness, I would say I am in pretty good shape.
Over the last two or three days I have used the respirator for a short period in the morning and again in the afternoon as suggested by the Papworth doctors but the sessions lasted only around 30/45 minutes, rather than the two hours suggested by Dr Michael Davies. If I did that there would simply be no time to do anything else. I know that even MND patients deteriorate at different speeds and even plateau-my Chancellor’s representative has been in a wheelchair for over 20 years and the MND stopped at his waist. In my case the only area that I observe which is worsening slowly, is my arms. They really are too heavy to get up to my nose or to wipe my eyes. This can be very boring for the poor carer who has to spend every few moments wiping my nose and eyes. Although, having said that, both legs arms and hands are completely useless, so I suppose there isn’t a great deal more that can go wrong. I have my blood pressure taken again this morning and it was 166/83 which I believe is probably okay.
Dr West mention one of her MND patients, who I got the impression was not very was taking a holiday on the Norfolk Broads. Having booked in and had his narrow boat allocated, as he stepped from sure to boat, he died. No warning, no explanation if one tries to discuss this with the medical team you get the same answer from all of. There is no pattern, therefore no warning. Every MND patient is different. The only conclusion they have been able is a rough percentages which die early and the balance which survive the five years. (The first indication I had was a weakening in my left arm which manifested itself in the gym in September 2008)
I suppose I shall know that the end is nigh when I am left in bed all day. The only problem with that is the pain from my joints. From all the case records I have seen none of them have complained of this pain so I wonder why it afflicts me? For this reason I cannot believe I will die in bed. At least when I am up, dressed and in my study chair, the remote control can be used regularly to change the pressure positions from whence most of the pain emanates. Anyway, here’s to the next target, the 3 millionth hit on the blog (now imminent), then Christmas, then the New Year, heading towards our Golden Wedding Anniversary, 16th March. If I get to that point we will have to re-evaluate things then.
After this rather dry entry, check here to be amazed by some youthful madness.
Good morning DCM. I read you blog every day. Today your blog is longer than of recent date and I feel is full of optimism. I find your blog to be inspirational (Truly). I know that you will see your Golden Wedding Anniversary. Carry on leading the way.